Navigating medically complex patients through system barriers: Patients’ perspectives on care coordination

Introduction: Care coordination can improve healthcare quality and reduce costs. The objective of this study was to provide a qualitative understanding of the most helpful coordination services as experienced by patients receiving these services to reduce emergent hospital use. Methods: Using case study methodology, we conducted focus group conversations with 51 care coordination patients and semi-structured interviews with 29 care coordinators at nine sites throughout Texas. The study team performed constant comparative analysis, beginning with start codes based on prior research. Results: On average, focus group participants were 47 years old. The majority of participants reported a high school or General Equivalency Diploma level of education or less (84%), an annual income less than $14,999 (87%), and living with multiple chronic health conditions (60%). The majority (85%) of care coordinators reported backgrounds in nursing or social work. In our analysis, themes of what patients found most helpful fell under a broad social support framework (instrumental, informational, emotional, and advocacy) that care coordinators were uniquely situated to provide. Discussion: Our paper adds to existing evidence by providing perspectives of patients with complex medical and non-medical needs about which care coordination services are most helpful. In this sample, patients with high needs describe reliance on professional sources, rather than their own social networks, to address several aspects of social support and to help meet non-health-related, as well as health-related needs. This can inform providers’ approaches to treatment as well as program administrators’ decisions about addressing and prioritizing services in care coordination programs.